My name is Gordon Darroch. My two sons have both been diagnosed with Autism Spectrum Disorder (ASD). This is a blog about raising autistic children: the highs and lows, the joys and agonies, the hopes and fears, the sheer bloody-fingernailed exasperation and the "Eureka!" moments that every breakthrough brings. I hope that through writing this blog I can in a small way improve my own and other people's understanding of this often bewildering condition.

Thursday, 5 October 2017

How can you grieve without language? It
was a question we had to deal with even as we prepared to emigrate while Mageld was dying in April 2014.

We learned from the start that there was no
point hiding things from the children. On the day she was diagnosed,
18 months earlier, Adam clung to her ferociously as she dropped him
off at the school gates. She hadn't told him about the appointment,
but he sensed an imbalance in his world. When she lost her hair to
chemotherapy, Euan went through a routine of trying on her
headscarves and rubbing her head when he came home in the afternoon.
And when she learned the cancer was killing her, she sat down with
them at the kitchen table and told them she couldn't be there for
them in the future. 'But you're here now, mum,' Adam replied evenly.

When Euan started school he was
assigned a play counsellor. She laid out games on the floor, gave him
paper and crayons and tried to connect with him using the game as a
prop. Euan scarcely responded. The language barrier, the strange
surroundings and the unfamiliar routine left him emotionally
paralysed. After a few weeks she delivered her report in which she
said that he had little idea why he was in the Netherlands or where
his mother was now. 'I asked him where she was and he said: “In the
hospital”.' Yet we had made a point of taking the boys with us on
every step of the journey, up to and including her death, and I
couldn't recognise the description in the report with the boy who had
clung to me at his mother's funeral and cried with anguish as the
coffin retreated behind the curtain. Only now do I realise how Euan
furled into himself in the months after Magteld died, as impenetrable
as an armadillo in its shell.

To the outside world the boys seemed
entirely unaffected by their mother's absence. A
counsellor said to me: 'As long as they're not showing any signs of
distress, don't worry.' If these words were meant to reassure me,
they failed. It was inconceivable that they were unaffected by such a
rupture in their lives, and the fact that they were unable to display
or discuss it left me frustrated, alienated and anxious. The one time
I managed to raise the subject at the dinner table Adam replied
flatly: 'She died, and we don't want to talk about it any more.'
Unable to tolerate my distress, Adam shut it out, sometimes
literally: if he caught me sobbing he left the room and closed the
door. We were like a dysfunctional version of the three monkeys: see
no grief, hear no grief, speak no grief.

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Three years later it remains a largely
unspoken trauma, an absence of an absence. My efforts to incorporate
anniversaries and memorials into our routine have fallen on stony
ground. Pictures of her hang in every room, almost invisible. I feel as if I am carrying the burden of memory alone, though
sometimes, if I'm lucky, I can goad them into recalling a favourite
film or a place we visited together. At a castle in Sweden two years
ago Adam reminded me how we had stayed in a castle with Magteld a few
years earlier – a wretchedly cold, wet weekend during our last
winter in Scotland that was nevertheless full of warmth and hope. A
breakthrough of sorts came when Euan's carer managed to coax a few
snippets of memory out of him, in the borrowed language that he uses
to communicate: 'Euan is worried about his family. His mother is in
the hospital. And that's how he is very very upset about his mother.'
It was the first time that he expressed his feelings, even
indirectly. But it was not so much a chink of light as the blur of
the sun behind the clouds. Without language the grieving process is silent and turgid, like a solo pilgrimage.

Monday, 4 September 2017

A little over three years ago our
family underwent a violent change in circumstances. Magteld died, at
the age of 38, from breast cancer, leaving the three of us who
remained bereft and bewildered. To make things even more challenging,
we had just emigrated to the Netherlands. Her long-cherished dream of
returning, and mine of starting a new life in her country, was
twisted out of shape in the last months when she was told her cancer
had returned. We had sold our house by then and it was too late to
pull back, so we pressed ahead like an Atlantic rower trying to
outrun a storm. Magteld lived for just seven more weeks in her native
land.

I am going to close this blog shortly.
Euan turned 14 earlier this year and is at the point in life where
his need for privacy outweighs my need to write about his progress.
But before that I want to look at what we've learned about autism in
the most exacting of circumstances. We've been tested by grief, by
isolation, by the barriers of language and bureaucracy, and we've
survived. I sometimes even dare to think we're thriving.

Looking back I sometimes wonder what on
earth we were thinking of. It was like attempting to recite the
complete works of Shakespeare from memory while trekking to the South
Pole on crutches. The boys had to adjust to living in a new place,
with new schools where the lessons were given in their other
language. The country they called home and the one they visited would
swap places and remould their identities. And at the same time a day
was coming when they would no longer have a mother and look for
guidance and stability from a father who was grappling with his own
overpowering grief. We would go from being a cross-cultural family of
four to an expat family of three, and so cross not one border, but
two.

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How did we set about making sure that
the boys were not left displaced and traumatised by this conflation
of extreme events? They depended, and still depend, on routine and
familiarity to orient themselves. They struggle to communicate, so
how would they cope with switching language. And from my point of
view the crucial thing was to find a way of recognising when they
were in trouble, since both of them find it daunting and difficult to
communicate their emotions. The solutions I found, and the lessons I
learned in the process, will be the focus of the next few blog posts.

Sunday, 2 April 2017

Ah yes, I remember the milestones. The
joy of sharing the early ones: smiling, chuckling, rolling over,
crawling. Then came others that didn't go so well: listening, toilet
training, talking. Talking, especially. Other parents would puff up
with pride as they repeated their child's first words, followed by
their first sentences, and then all the cute things they said as they
experimented with language, while ours stubbornly refused to
progress. Frustration gave way to anguish, stoked by false
reassurances from well-meaning friends and relatives, until finally
we heard the words we dreaded at first but ultimately craved: 'your
son is autistic'.

When your baby is born childhood
stretches ahead of you like a floodlit yellow brick road, lined with
solid white milestones: here is talking, here is walking, here is
hitting the swing ball in the back garden. In the distance you can
make out university, the first pay cheque and the wedding where you
get to make a tenderly triumphant speech. All parents find out sooner
or later that this straight and narrow path is an illusion. The
advantage those of us with autistic children have is that we find out
much sooner. The knowledge that we will have to cut our own way
through the thicket, in semi-darkness and with the ever-present
danger of low-hanging branches, can be daunting and overwhelming. But
once your eyes adjust it takes on the character of an adventure. And
the deeper you go, the more you come to appreciate the beauty of the
trees and the sense of pride, when you look back and see the path you
have created. It may not be particularly straight or well paved, but
it's indelibly yours, and it exists mainly because you kept hacking
away.

I know people who still believe they're
on the yellow brick road, even when their children are in their
teens. They see David's B minus for an essay as a
minor catastrophe, or go into convulsions if Lydia fails the entrance
exam for Cambridge and must confront the horror of three years at
Keele. I don't envy them. I pity them for being so blinded by the
bright lights on the straight road that they live in constant fear
that even the smallest deviation will send them over a precipice.
When the reality is an uncharted forest that seems intimidating in
the beginning, but through exploration becomes challenging,
fascinating and rewarding.

In place of the milestones, I've
created my own mudstones. Here are some of them: making it through a
restaurant meal without anybody staring and tutting; eating
vegetables that have been cut in the wrong shape; first phone call
(age 12). And a few still in progress: tying shoelaces (age 13);
losing the red mark on his forehead that comes from bashing it with
his fist in frustration or excitement (I promised three years ago to
take him out for cake when he achieves this one); telling me how much
they miss their mum.

There was a time when I grew angry and
resentful when other parents started up about their children clocking up
the milestones (“He's so advanced! He was walking at 11 months.”
– as if it could make the crucial difference one day in a job
interview). These days I tend to nod and smile, and hope for their
sake that the shock, when it comes, isn't too devastating. Most of us
leave the straight path sooner or later, and it's often then that we
discover the truth about ourselves. The unexamined life, as Socrates
supposedly said, isn't worth living. Autism is a life of examinations, in every sense.